Immediate and 6‐week after effects of a rehabilitation program for Ehlers–Danlos syndrome hypermobile type patients: A retrospective study

Abstract

Ehlers–Danlos syndromes (EDS) are a group of inherited connective tissue disorders with an impaired quality of life in association with fatigue, pain, and kinesiophobia. A retrospective evaluation of the effects of an outpatient rehabilitation program (RP) was performed in Ehlers–Danlos syndrome hypermobile type (hEDS) patients. The 6‐minute walk test (6MWT) was used to evaluate functional capacity. Kinesiophobia, fatigue, pain, and quality of life were self‐evaluated at the start, at the end, and 6 weeks after the end of the RP. The retrospective analysis of patients' records showed significant improvement for the walked distance during the 6MWT (491.8 ± 72.5 vs. 439.4 ± 100.9 m) maintained at 6‐week follow‐up (p = .001), significant improvement for kinesiophobia (p = .033) and the impact of fatigue on activity (p = .01), and significant increase for quality of life with in particular improvements of vitality (p = .001). This retrospective study showed encouraging results of a RP for hEDS patients on functional capacity and quality of life, and prospective studies with long‐term follow‐up are needed to confirm them.

The Relationship Between Generalised Joint Hypermobility and Autism Spectrum Disorder in Adults: A Large, Cross-Sectional, Case Control Comparison

“…Because of this, we advocate for clinicians to be observant on musculoskeletal problems in patients with ASD, particularly since social and communicative problems may hinder access to health care ( 37 ). If acknowledged, improvement can be obtained by physical and occupational therapy ( 38 ). In the current study, only four additional manifestations of GJH were briefly examined.…”

Developing a self-management intervention to manage hypermobility spectrum disorders (HSD) and hypermobile Ehlers-Danlos syndrome (hEDS): an analysis informed by behaviour change theory

“…Although this study focused on the barriers to self-management in HSD/hEDS, in any formal self-management intervention, facilitators to the self-management of HSD/hEDS, such as aerobic exercise or strength training would also be included. For example, since this study was conducted, novel research examining an inpatient self-management intervention for patients with HSD and hEDS was conducted in France [53]. The inpatient intervention programme for patients with hEDS included occupational therapy input, physical activities to improve muscular endurance and coordination, proprioception exercises to improve balance, relaxation exercises, and self-management workshops to improve patients' knowledge of hEDS [53].…”

“…For example, since this study was conducted, novel research examining an inpatient self-management intervention for patients with HSD and hEDS was conducted in France [53]. The inpatient intervention programme for patients with hEDS included occupational therapy input, physical activities to improve muscular endurance and coordination, proprioception exercises to improve balance, relaxation exercises, and self-management workshops to improve patients' knowledge of hEDS [53]. However, although kinesiophobia and quality of life were significantly improved by the end of the programme, this was not maintained at 6 weeks post-intervention, which raises questions for patient management and support following the study [53].…”

A review of respiratory manifestations and their management in Ehlers-Danlos syndromes and hypermobility spectrum disorders

“…67,68 Six-minute walk and cardiopulmonary exercise testing may help characterize exercise tolerance and autonomic dysfunction. 69,70 Careful consideration, especially in vEDS, should be undertaken before performing bronchoscopy given increased tendency for bleeding and tissue fragility, but may be useful to document vocal cord function, tracheobronchomalacia and sources of bleeding. 41,53 Furthermore, arterial blood gases are best avoided due to fragile arterial vessel walls.…”

“…86,87 Six-minute walk and cardiopulmonary exercise testing may help characterize exercise tolerance and autonomic dysfunction. 88,89…”